So close to the referendum date, over two dozen patient groups have come together to write an open letter to draw attention to the great many benefits the EU brings for health care and modern treatments.


As representatives of rare-disease patient organisations, we would like to make known to the wider public the huge benefit that we see in EU membership for rare-disease patients right across the UK.

The EU’s active promotion and funding of research networks, medicine regulation, public health protection, employment protection for the disabled, infrastructure for medical advancement and cross-border patient networks have all helped secure a better quality of life for citizens living with rare-diseases.

Within the field of rare-diseases, experts as well as patients themselves may be geographically distant. This can make disorders difficult to diagnose, research harder to initiate and cures less cost-effective to develop. This is even more acute in smaller EU countries but is a major issue even for the UK. By banding together through common EU mechanisms, our countries share funds, data, resources, ideas, policy and infrastructure to tackle health issues that require collaboration on an international scale. The European Medicines Agency, based in London, streams treatment approvals from 28 countries into one process. We have built so much together to help our patients. Leaving would disempower that caring, collaborative force for good. It would slow the progress being made through EU collaboration towards better diagnoses and more effective therapies for the people we represent, and would risk closing down some of the most cutting-edge clinical trials currently happening in the UK.

These are the personal views of the signatories below.

Yours sincerely,


Alastair Kent OBEDirectorGenetic Alliance UK
Fiona LawrenceDirector of Research and Clinical DevelopmentDuchenne UK
Emily CrossleyCo-founderDuchenne UK
Mrs Alexandra JohnsonChief ExecutiveJoining Jack
Anne LennoxChief ExecutiveMyotubular Trust
Miss Sara HuntChief ExecutiveALD Life
Mr Oliver TimmisChief ExecutiveCambridge
Mrs Carlee GilbertDirectorChILD Lung Foundation
Mrs Nichola EjazChairpersonDancing Eye Syndrome Support Trust
Ms Fl—ra RaffaiExecutive DirectorFindacure
Mr Chris Bedford-GayChairman / TrusteeFOP Friends
Mr Nick ChildChairmanChild Growth Foundation
Ms Susan PassmoreChief ExecutivePrader-Willi Syndrome Association UK
MRS PHILLIPPA FARRANTDeevelopment OfficerDuchenne Family Support Group
Mrs Lisa FlintFounder & Managing DirectorThe AADC Research Trust Children's Charity
Miss Stephanie CarrStudentNewcastle upon Tyne
Mrs Julia CarrMotherNewcastle Upon Tyne
Rachael StevensonCo-founder and Executive DirectorReverse Rett
Dr David MillerChair, Board of TrusteesCiliopathy Alliance
Miss Elizabeth GreallyResearch AssistantInstitute for Genetic Medicine, Newcastle University
Rev. Martin ShortChairmanTuberous Sclerosis Association
Mr. Yann Le CamChief ExecutiveEURORDIS
Mr. Terkel AndersenPresidentEURORDIS
Dr. Chris SotirelisPatient AdvocateEURORDIS
Kate RyanConsultant Haematologist for Haemoglobin DisordersManchester
Ms Jane FisherChief ExecutiveAntenatal Results and Choices (ARC)
Terence HoeyChief ExecutiveThe Ultra Rare Disease Disorders & Disabilities Foundation (Belfast) Northern Ireland

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